A True Story.

Standard

It was three years ago already.  Can it be?  Three years since we went to the Emergency Room on Christmas.   It seems like yesterday and it seems like a hundred years ago.   Joel had pneumonia that was not improving.  He was so bad by Christmas that he needed some sort of short term help at least.  We were visiting my mom for Christmas, around 4 hours away from our house and the doctors he had been to at least three times in the last month.  There was nothing that could be done for him at the ER that had not been done already.  After a breathing treatment, we were sent home.

The following day we drove home.  We made (another) doctor’s appointment for the next day.  Our hope was that He would be admitted to the hospital, so we could figure out what was going on.  Luckily, that was the doctor’s plan as well.  Joel got admitted right away.  Since we were hoping to go to the hospital, I had dropped Jonah off at a friend’s house.  Joel and I got settled in the hospital.  Some routine tests were run that first afternoon, as well as a bronchoscopy (pulling a piece of tissue from Joel’s lung to be analyzed.)

I left the hospital around 9pm- I had to pick up Jonah and arrange care for him for the next day.  The next morning, our beloved friend Mike showed up at our house, bright and early.  He volunteered to watch Jonah for as long as was needed that day.  About five minutes after he showed up, it happened…the phone rang.  The event that happened next I will never be able to forget.  I answered, only to hear Joel on the end of the line.  He was…sobbing, hysterical.  Quite literally, I can picture this exact moment…his words:  “The doctor just came to my room.  He had test results.  It’s not good…I have HIV.”  The next hours are a blur…Somehow I got to the hospital…somehow Jonah got to my sister’s.

Here’s what had happened:  some young, jerk doctor had come into my husband’s hospital room (while he was by himself WITH NO SUPPORT WHATSOEVER, and WHILE PNUEMONIA WAS KILLING HIM) and told him that he had HIV.  That the standard (first) HIV test came back positive, and that he would have the secondary test run to confirm the results.  That he could expect that it, too, would come back positive, but that it takes 4 days to get the results back.  Oh my GOSH, you guys, he even told Joel that “living with HIV is different now than it was before.  There are medications that make you live a longer, better quality life than 10 years ago.“ I cannot even tell you.   We thought he had HIV.  We were so very confused about how he got it, but still…we thought he had it.  And therefore I thought our entire family would have it…me, Jonah.  It was…devastating…

So that happened.

And THEN we had to figure out what in the world was actually going on with Joel.  The finding out part happened pretty quickly, actually.  Luckily, one of the beloved main characters of this story arrived at this point -Joel’s infectious disease doctor.  Once the results from the bronchoscopy came back, he was able to clearly diagnose Joel with something called blastomycosis.  “Blasto” as it’s commonly called occurs when someone inhales a fungus spore and it gets lodged in their lungs.  It is rare, and deadly, primarily because by the time a person figures out what they have, it can be too late for treatment to work.  I do think another two weeks and Joel would not have pulled through as well as he did…

It was only day two of the hospital stay…in the 24 hours prior I had found out that my husband had HIV and this rare and life threatening fungus.  I cannot even tell you.  My whole world was turned upside down in the blink of an eye.  I was already emotionally fragile, as our 3rd miscarriage occurred only months before.   Plus, Joel was worsening, and now highly medicated.  So the actual scientist in the family was lying on a hospital bed, completely out.  I was left to figure out what was going on, and what we were going to do.   I was very aware that I was losing my mind.  As I’m sure happens with most people in this situation, I went into crisis mode- I was hyper functioning.  I knew my body had to be as highly functioning as possible, so I did the following:

  • I got myself a yellow legal pad and I took fervent notes anytime any doctor came in to do his rounds, just so I could make sense of it all.
  • I ate incredibly healthy- making sure to get protein, fiber, and enough water.
  • I went for walks in the hospital when Joel was sleeping.
  • I tried to get as much sleep as I could- which didn’t really happen…I was a functioning insomniac
  • I tried to keep Joel’s family in Ohio as informed as possible.
  • I journaled as much as possible, which usually was in the form of updating the prayer chain at church, emailing our social circle, etc.

They started treatment for the blasto right away.  Which…was the worst 48 hours of my entire life.  The first and most effective treatment was an interveinious medication, similar to chemotherapy.  The plan was to run the meds overnight, over the course of three hours.  The first night was horrible.  Joel’s veins kept collapsing, so they would have to shut down the medication, get a new IV administered, and start it up again.  When the medication was being administered, his body would shake violently, and he would hallucinate.  Twelve hours later he was finally done with the first batch.  The second night was worse…primarily because I knew what to expect.  It was…bad.  Really, really bad.

Also, at the same time, because it was a weekend, and then the New Year’s holiday, the labs were closed for days at a time and what was supposed to be a 4 day turn around on the 2nd HIV test turned into seven…

By now, it was New Year’s Eve.  In the movie While you Were Sleeping, the guy was in the hospital on New Year’s.  The nurses were singing Old Lang Syne and toasting.  I remember thinking about that, as I sat on the floor in the hallway of the hospital outside of Joel’s room.  When that clock struck midnight, no one was singing.

I was so very broken- I would weep openly, pretty much the entire time he was in the hospital.  Plus, because of the way the first morning went down, I was obsessed that no one talks to him unless I’m in the room.  I wrote my cell number on his white board and made sure every single person working knew my mantra:  “no one talks to him unless I’m in the room”.

It was a strange mix of admiring my own strength, and knowing, for certain, that I was quite literally going to lose my mind at any minute.

I plastered Bible verses all over his room.  I read my Bible like a madwomen.   I knew- this was the moment I was going to make a choice:  either everything I had ever claimed to be true about God was true…or it was all a crock.  I knew.  It was true.  It was not a lie.  And God showed up, in that little hospital room.   Not in a pretty, tidy way- He didn’t make it all stop- but He was present  in our mess.  The Holy Spirit definitely helped my mind and body to function in the midst of the crazy storm I found myself in.  A verse from Isaiah became our resounding theme:

When you pass through the waters, I will be with you; and when you pass through the rivers,they will not sweep over you. When you walk through the fire, you will not be burned; theflames will not set you ablaze. Isaiah 43:2

The nurses were all so very kind to me.   I felt bad for all them for having to deal with me.  Which is funny, because they all felt bad for me…The day before Joel was discharged, the head nurse told me that they were heartbroken for me- because they knew that either the HIV test was a false positive, or that this was how I was finding out that my husband was having an affair…

We had a couple of people telling us the whole time that it was a false positive.  People who had the knowledge to know stuff like that.  People like our friend Lee, a respiratory therapist who just happened to be doing a four or five day shift at the same hospital.  He would stop by after his shift was over and talk to us. I appreciated his confidence in the false positive so much and wanted to believe that what he was saying was true.  But because our situation started with such chaos, and because the jerk doctor told Joel that it was TRUE, not just a possibility, but true, I simply could not believe it.

Joel’s 8th day in the hospital was the last day of his infectious disease doctor’s shifts.  The next day we would get someone new.  He came by the room to say goodbye.  Seriously- not even on a final round, but to say good bye to us.  This man- he was a gem.  He was the best doctor I have ever, ever worked with.  He was personal, and informative.  He wore sweater vests every single day and sounded  just like Patrick Dempsey.  He obviously cared for us.  He told us that he “googled” Joel because he liked to get to know his patients.  In the first half of the story, Joel was pretty much out all the time, so there was no real way to get to know him other than to google him.

The next day, when I saw him at the nurses’ station, I knew something was up.  He came BACK to the hospital so he could be the one to give us the news.  After 9 days in the hospital, 9 days of thinking HIV was our new reality, 9 days of horrible medications and wondering if Joel would survive, the fog was lifted.  He told us that, yes, the second HIV test came back NEGATIVE.  That Joel did NOT have HIV.  And that Joel could go home the next day.  A long-term treatment plan was made for the blasto, questions were asked and answered.  I got to sleep in my own bed that night.  And then, the next morning, I picked Joel up and took him home.

In the months that followed the hospital stay, I could see that I had a small level of post traumatic stress.  I don’t know for sure, but I could see that being common for people after something like this.  I don’t think about the hospital stay on a regular basis anymore.  In retrospect, of course I see that this story had a happy ending.  Three years later, Joel is healthy.  His lungs are functioning almost normally.  None of us have HIV.     And as I reflect on this part of our greater story, I don’t necessarily have any grand wisdom.  But what I do have is this:  Of course I feel like I’m losing my mind sometimes…  In the course of four years, I have had three miscarriages, almost lost a husband, then found out that there is no way we will be able to conceive more kids.  Of COURSE I am a hot mess.  I should be after all this.

I’m not one to make New Year’s resolutions.  But I do make goals all the time.  If you were to ask me, I could share with you an organized list of goals according to the time in which I’d like to complete them.  For the day, week, month, 6 months, and year.  But- above them all is one thing:  my goal, for each day, is to get through it.  To do the best I can where I’m at.  And to be okay when my best is just really messy.  I don’t know what to expect from 2014.  I am neither hopeful nor weary…just a strange kind of present- in THIS moment.  Because that is the only place I know to be right now.

 

Advertisements

2 thoughts on “A True Story.

  1. It seemed like we wee all trapped in a weird discordant place in time. I remember everyone giving what they could, very long hallways and knowing that Jesus was with us every minuite

  2. Oh my goodness. A million people have probably said this to you, but I’ll say it anyways – I cannot even imagine. Thank you for sharing this story with us. In some ways, it made me so angry (what horrible care your received by some of the staff!) and in other ways, it gave me so much hope (if she could do that, we can all probably make it through more than we think we can).

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s